Update on Alannah Gracyn

We were diagnosed at 19weeks5days with LCDH. I am currently 25 weeks2days. We had another ultrasound done Thursday and as it appears it is still ONLY the stomach that is out of place. So far everything else remains below the diaphragm, fluid levels (I feel like a car) are all good, heart is beating well, LUNG GROWTH looked GREAT! I was sooo relieved to hear that! While I know I still have a little ways to go, and a few more ultrasounds and Echos for her heart things looked good considering what it could be! Im praying that as she grows only the stomach remains and doesnt begin to cause a prob with lung growth and function. She finally hit a growth spurt...and boy can i tell when she wants to stretch! She is weighing in at about a pound 8 oz and her legs have finally grown to reach a good percentage.

This diagnosis has been sooooo stressful for me as I am the mother of 4 older children and the wife of a traumatic brain injured husband. All is going day by day and thats the only way I have found I can take it...sometimes just hour by hour.

Good luck to everyone and prayers for us, our families and our little ones as we face decisions that are coming to us

Comments (4)

Just stay positive. That is what we did, we also did not look at anything negative or with sad outcomes before our baby came, actually we still haven't and he is just over 3 weeks old now, he was a left sider as well! Right up until he was born the only thing in his chest was his stomach, After he was born other things went up there but since it was after his birth it didn't infringe on his lung development(it was his stomach, small and large intestines and his spleen). He has 2 large healthy lungs and I brought him home from the hospital this past Thursday, it was the day before he turned 3 weeks old! Also he came home with nothing, now medicine, no feeding tube and no oxygen. BE positive and if you are a prayerful person....say lots of those!!!!

Oh where are you located?(state wise) I am just curious because I know that the only hospital in my state(Indiana) that has ECMO capibilities is not far from me...luckily and they were WONDERFUL and I could give you lots of pointers on the hospital and the doctors and nurses!